Joanne Collevy was always "supremely" fit and healthy. She had a personal trainer, lifted weights, and walked five kilometres a day. She loved horseriding and had an active social life.
However, her life changed dramatically when she was 29-years-old. The former general nurse at Portiuncula University Hospital in Ballinasloe contracted Covid-19 at work and went on to develop Long Covid. She never recovered and had to give up her career.
Today, the 33-year-old Mountbellew woman continues to suffer from a wide range of symptoms including severe headaches, nausea, a sore throat, and fatigue.
"I got Covid at work in April 2020, at the start of the pandemic," she says. "Our ward wasn't supposed to have Covid in it. We weren't wearing PPE at the time and the thinking was that the virus was not airborne. About three days after being exposed to it through a patient, I got sick. Everyone was saying the virus was respiratory. However, I had an upset stomach, a headache, and a dry cough. I also had a high temperature, sore throat, and tiredness. All the symptoms were coming at me and they never really left me."
Joanne spent that weekend in bed. "I felt rotten. A week into it, I became really, really sick. I got a bad headache." It was the worst pain she ever experienced.
"I never had a pain like it, it was a cause-for-alarm headache. It was like I was having a stroke or a brain tumour. When I went back to work [night duty] after being off for a week, the headache continued. It never left me. I knew something was wrong." She has not returned to work since then.
More than four years later, she continues to grapple with ill health. "I never came back to myself, I never got better. I am sick basically every day. Some days are bearable, others are unbearable. I'm not living, I'm only existing".
Her energy levels are low, she has crippling fatigue, and she contends with severe daily headaches. "I've been to two neurologists and have tried loads of treatment and experimental drugs but none of them has worked. Normal painkillers won't shift the headache. I have strong painkillers to take the edge off it but they don't always take away the pain."
Food shop
Long Covid, which affects six per cent of Irish adults, according to the latest health research findings, has cast a dark shadow over her day-to-day existence. She tries to live as normal a life as possible within its confines. "I wouldn't be able to go for a walk, you pick and choose what you do. If I do a food shop, I can't do anything else for the day. We have horses and I went to see one of them running recently but had to spend days in bed afterwards."
The fatigue associated with this post-pandemic condition is all consuming, says Joanne. "You feel exhausted, it's worse than the worst flu. You have a complete lack of energy day-to-day. This could be for no reason. You can't fight it, I just fall into bed. I have massive brain fog as well and am very forgetful." She also has ringing in her ear.
When she first became ill, she was very angry. "I was angry that people thought I was mad. They thought it was all in my head and would say: 'How could you still be sick?' It was so disheartening, some people had no understanding of the impact of it." One of those was a medical specialist who said dismissively that she was depressed. She says thankfully she was able to stand up for herself.
She is fortunate she has an excellent GP and consultant. "I know a lot of people were gaslighted by doctors. I was lucky. My local doctor, Patrick Burke in Mountbellew, is very good and the consultant that I attend at the Long Covid clinic at the Beacon Hospital is the best doctor I ever met. [While there is a Long Covid clinic at University Hospital Galway, the Dublin facility was the first to be set up in Ireland.]"
Joanne says she is surprised she is so resilient. She enjoys taking her young brother to and from school and spending time with her family's horses and her dog. Her father has been a massive support to her. "My mindset is very good. An odd day, I say: 'Damn this!'. I let myself feel down but I don't stay there. It's the opinion of my consultant that because I have had it [Long Covid] for so long and because of its likeness to ME and other post-viral illnesses, that I'm likely to have it for life. But I don't feel like that. I'm hopeful there will be a cure. Some people have got better."
She is part of a worldwide group to which no-one wants to belong. "An estimated 400 million people worldwide have Long Covid, in the UK there are over two million sufferers. A study at the University of Exeter indicated that Long Covid can impact your life worse than some advanced cancers and Parkinson's disease."
What does she miss most? "I miss life, in general. I can't socialise. Any effort, even a conversation, takes a toll. I always feel terrible, it's just different levels of terrible."
John's story
On a good day, John (not his real name ) can walk 1,000 steps. The 28 year old Co Galway man contracted Covid-19 early last year and went on to develop Long Covid. His health deteriorated rapidly and he had to give up his job, working in a warehouse, in Galway city.
"I was in perfect health before I got Covid. I used to play Gaelic football and soccer," he says. "But in early 2023 everything changed."
He had been vaccinated against the virus but contracted it from one of his family. He had escaped the infection until then.
John became ill quickly. "I had a runny nose, a temperature, and shortness of breath. I didn't have any tiredness or loss of appetite. I was sick enough for a week or two - I was in bed a lot at the beginning."
He returned to work after two weeks but had not regained his full health. "When I was lifting stuff, I began to get chest pains and lightheadedness. "I'd sit down for a few minutes and then I'd work again. But I'd get lightheaded again. I thought this would pass so I wasn't paying much heed to it. That's when the tiredness hit in the evenings.
"On my first week back to work, I kept getting worse. By the end of the week, I had to take more time off. I was dizzy and lightheaded and had constant shortness of breath. My doctor didn't know what was going on and prescribed an inhaler for me."
His condition worsened quickly and three weeks after getting Covid-19, he attended UHG's emergency department. That was the first of four trips he made there over several months. "I couldn't stand up when I first went there. They took bloods and they were OK. The worst thing was they weren't believing me. I was sent home each time.
Pure purple
"One morning, I got really bad, my feet were pure purple and my heart rate was really high. I called a random cardiologist and he brought me in and put me on medication. That helped a lot." He is being treated for postural orthostatic tachycardia syndrome (POTS ), a disorder that can cause a fast heart rate, lightheadedness, dizziness, and fatigue when you transition from lying down to standing up. Some research points to a link between Covid-19 and POTS. "When I am sitting, my blood pressure is perfect but when I stand up, it rockets."
Today, John is coping with numerous symptoms. "I have tinnitis - I have constant ringing in both ears. I have neuropathy [nerve damage] in my hands and feet which causes burning pins and needles which is worse during cold weather. This seems to be spreading to the side of my leg now and I'm wondering will it spread more."
He feels less tired these days. "It's better than it was. But I'm not able to work and I'm mostly housebound. I'm able to have a short shower now but I would need to rest after doing anything. Before I started on the medication, [he is on a lot of it], I wouldn't have been able to shower or stand up.
"Using the washing machine was a big deal. I wouldn't be able to go to any social events. The only place I go to are medical appointments. I can't go to matches because when I'm standing up, my heart rate goes up. On a good day, I might walk 1,000 steps. I have an Apple watch so I can keep an eye on my heart rate."
He lives at home and is surrounded by family which is good, he says. He finds the days long but he tries to keep himself occupied by watching football and hurling and keeping in touch with Long Covid groups. "I keep up to date on treatments, too. The Irish Long Covid Advocacy group has been a great help. They put out information every day."
The hardest part of his Long Covid journey was not being believed. "At least my family knew I was sick. But other people don't believe it [Covid-19] exists. There is a stigma, you are ashamed to say you have it, you wouldn't be announcing it."
John is sharing his story to create awareness about the condition. "It is important that doctors and the public are aware that Long Covid exists. I've an excellent cardiologist. He's the one who has made the difference. I don't know where I'd be without him, I don't know if I'd be alive. I was wheeled into him, I'm walking now.
"I appreciate what I have and I know there are people worse than me. I don't expect too much too soon. I'm hopeful though - a company in Germany is working on a treatment for Long Covid."
Next Week: What is Long Covid, where can sufferers go for help and support, and how can they help themselves.
